Once upon time, there was an extraordinary girl named Olivia ("Oli"). She lived in Big Sur and called the redwoods and running creek her home. On January 16th 2019, nine year old Olivia put on her fairy wings and flew off to another world.
On October 30th 2018, out of nowhere, Olivia suffered a brain bleed. Previous to this date, she had always been a healthy child and had never shown any symptoms. She was airlifted to Lucile Packard's Children Hospital at Stanford where she remained in the ICU for two weeks. The bleed had caused loss of feeling on the left side of her body, problems with balance and eye issues.
Once stable, Olivia was transferred to Santa Clara Valley Medical Center to do acute rehabilitation, the diagnosis was still unclear. Olivia worked hard at rehabilitation and showed signs of progress. She never complained about her situation and always greeted every person that walked through the door with a smile. She showed us that she was an exceptionally dignified, determined, resilient and courageous girl.
Just before being discharged from Santa Clara, Olivia suffered another brain bleed and after further MRIs, on the 17th of December 2018, we were given the devastating news that no parent should ever have to hear; "Your daughter has DIPG." (Diffuse Intrinsic Pontine Glioma). DIPG is a high-grade tumor that is incurable and terminal. We were told that the average life expectancy would be about 9 months.
One month later, Olivia passed away peacefully in the arms of family at her home in Big Sur. Like a brilliant comet, Olivia illuminated everything in her path. Her spirit will forever continue to shine among us and will inspire us daily.
Olivia was the first time we had ever heard of DIPG. We have been learning that there is very little funding and research for this disease because it is unknown and relatively rare. We would like to help Unravel change that. Our first step was to donate her brain for research. Hopefully, that may help save other lives someday. We invite you to join us in this journey.
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